Newborn screening is a vital public health program that detects serious medical conditions that can cause devastating effects if treatment is not given prior to the onset of symptoms. Testing is mandatory in 49 states and the District of Columbia. The testing process involves the collection of a few drops of blood from a newborn's heel. Not all of the blood sample collected from newborns is used during routine screening, however, and after testing has been completed, many states retain the residual dried blood samples (DBS). These DBS have a broad range of potential uses, including program evaluation, development of new tests, public health and biomedical research unrelated to newborn screening, and surveillance for environmental contaminants.
This toolkit is intended to assist state policy-makers to develop or improve policies for the use of DBS and related information. It includes the following tools:
Information for this toolkit was collected through an online review of state statutes and regulations. See Methodology for more details.
This toolkit was developed by Denise Chrysler J.D., Director, at the Network for Public Health Law – Mid-States Region, University of Michigan School of Public Health, and Michelle Huckaby Lewis, M.D., J.D., Research Scholar, at the Berman Institute of Bioethics, Johns Hopkins University in collaboration with Aaron Goldenberg, M.P.H., Ph.D., Assistant Director of the Center for Genetic Research Ethics and Law at Case Western Reserve University. Preparation of the toolkit was assisted by a Public Health Law Research Program grant from the Robert Wood Johnson Foundation.
More resources for newborn screening and the use of DBS can be found here.